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Simmaron Research Foundation Study Targeting Roots of Immune System Breakdown in Chronic Fatigue Syndrome (ME/CFS)

June 13, 2014

Simmaron Research’s  new immune study builds on exciting research that is changing how we think about ME/CFS.

Twenty years ago  the internationally known virus hunter, Dr. Ian Lipkin of Columbia University, didn’t find Borna Virus in people with ME/CFS, but he never forgot the immune dysfunction he found.  Twenty years later he found more immune dysfunction in another study.

Isabel Barao, PhD, Simmaron Research Scientific Director

Isabel Barao, PhD, the Simmaron Research Foundations Scientific Director believes a genetic predisposition to immune problems could underlie ME/CFS

He doesn’t know why it’s there but he does believe that all ME/CFS cases – no matter what pathogen or other factor has triggered them –  devolve to a ‘common pathway’. The fact that pathogens of all types – from Epstein-Barr Virus, to SARS, to Giardia – can trigger ME/CFS suggests a core immune deficiency lies at the heart of the illness.

Every genetic study suggests an inherited susceptibility to Chronic Fatigue Syndrome is present. Dr. Mady Hornig of the Center for Infection and Immunity at Columbia University believes that a genetic predisposition in combination with an environmental trigger (such as an infection) occurring at just the right (wrong) time is probably key to coming down with ME/CFS.

For thirty or forty years you might be able to easily slough off this bug or that pathogen, but at some point for some reason the stars aligned; you were depleted in just the right way, the pathogen hit and with your immune system genetically predisposed to crack under the pressure – it did – and your entire system faltered.

gene strand

Simmaron is looking for the genetic roots of an immune system breakdown

Simmaron Research’s next pilot study is looking for that immune crack in the dike – the genetic underpinnings of the system collapse that occurred. Led by Simmaron’s Scientific Director, Isabel Barao, PhD, in collaboration with researchers at the National Cancer Institute and University of Nevada Reno, it will determine if your NK and B-cells and macrophages are genetically predisposed to respond poorly to a virus, toxin, or cancer cell.

Dr. Barao is studying whether people with ME/CFS have polymorphisms – unusual gene formations – that make their key immune cells less likely to respond well to viruses and other threats. That immune ‘hole’ many people have talked about with regards to ME/CFS could start here. We all know about the rampant NK cell problems in ME/CFS, but this study could help explain the B-cell problems recently uncovered in a German research study – and perhaps even shed light on why Rituximab may be working in some patients.

It’s the initial part of a projected three-part study that could end with drugs for ME/CFS. Once genetic alterations have been found, they’ll be correlated with immune findings. If that holds up, it’ll  be time to look for drugs to fix the problem, two of which are currently in clinical trials.

We-Have-Ideas

Support the Simmaron Research Foundation as it redefines how ME/CFS is understood and treated

Think about it. The high heritability rates in ME/CFS indicate genetic problems exist somewhere. Where better to look than the immune system?

This study is a no-brainer to me. It’s relatively cheap – it has a quick six-month turnaround – and the data it produces will lay the foundation for an NIH grant on topics they’ve  shown they’re willing to fund.

Help us redefine ME/CFS.  Support breakthrough science on immune deficiencies at Simmaron.

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39 Comments

  • Issie

    June 14, 2014 at 9:14 pm - Reply

    Some of us have been addressing things from this angle. Support the immune system and hopefully it will take care of the problem. Seems to be working for me. I’ve been saying for years now its a faulty immune system and inflammation plays a close second.

    The other thing I’m addressing is genetic related. If you do a 23&me test you find out where the genetic flaws are. Then if you dig deeper and look at methylation, you can see where a lot of the malfunction comes in and the breakdown of the immune system. Addressing the known mutations with diet and supplements definitely makes a big difference.

    I’m glad there will be science to back up what some of us are figuring out. It’s so wonderful when the pieces of the puzzle come together.

    Issie

    • Cort Johnson

      June 14, 2014 at 11:23 pm - Reply

      It sounds like the patients and doctors are ahead of the research in this area. A study documenting genetically determined immune dysfunction in ME/CFS would be huge and quite frankly I’m surprised it hasn’t been done yet. A Japanese study that looked at stress response genes found that a polymorphism in a natural killer cell gene jumped out. – http://www.ncbi.nlm.nih.gov/pubmed/18596870 – then they were able to classify the CFS patients correctly using their findings.

      They stated “Our results suggest that the defined gene cluster (9 genes) may be useful for detecting pathological responses in CFS patients and for differential diagnosis of this syndrome”

      Despite the success that was the last we heard of them.

      • CFS Facts

        June 15, 2014 at 7:40 am - Reply

        The patients are ALWAYS ahead of the research.

  • GO

    June 15, 2014 at 5:03 am - Reply

    How does one sign up for this study?

  • Caron Ryalls

    June 15, 2014 at 6:48 am - Reply

    This is very exciting news, however the implications are potentially catastrophic for governments, and I wonder how far the research will allowed to go. I refer specifically to vaccinations, which are many ME sufferers attribute as being the trigger for their ME. If a specific genetic marker is found which confirms susceptibility, what implications will this have for the national vaccination programmes? And will it open the floodgates to vaccine damage compensation claims?

    My interest in this due to my daughter developing ME and POTS following her HPV vaccination at the age of 13. Here in the UK, the regulatory authorities have gone to extraordinary lengths to assure the public that the HPV vaccine doesn’t trigger ME/CFS but the evidence is mounting up. In France, a judge from the French ‘vaccine court’ recently made a judgement that a teenage girl be awarded 50% compensation following her development of Multiple Sclerosis following HPV vaccination. The judge stated that 50% was due to genetic predisposition and 50% to the HPV vaccine being the trigger.

    • Issie

      June 15, 2014 at 8:14 am - Reply

      I feel an oral polio vaccine was a trigger for me, my sis and a friend of ours. We all got sick at the same time and have the same symptoms. The friend, of course, isn’t blood kin. But, this was passed on by my sis to her kids. We have POTS and/or OI with MCAS, EDS and CFS and/or FMS.

      Issie

      • Caron Ryalls

        June 24, 2014 at 1:21 pm - Reply

        That’s interesting as my daughter has developed signs of connective tissue problems since she’s been ill. She also has been diagnosed with POTS. There are very weak signs of connective tissue problems, possibly EDS, in our wider family but not to necessitate medical investigations or to affect functionality. I’m convinced the vaccine, with a novel adjuvant, overstimulated her immune system and caused a cascade of problems. At the time of vaccination she was also heavily into sport, and at 12 was going through puberty, so lots of stress already on her immune system.

  • CFS Facts

    June 15, 2014 at 7:43 am - Reply

    Intriguingly, the only other person in the extended family who has CFS is not a blood relation. So I must be a genetic mutant in the family…..

    • Cort Johnson

      June 15, 2014 at 6:58 pm - Reply

      Nobody else in my family has it either but my mother had Sjogren’s Syndrome and a distant relative of hers had MCS/ME/CFS….Some heritability appears to be present but I’m probably in the more weakly heritable group. 🙂

  • Kristine

    June 15, 2014 at 3:19 pm - Reply

    I had Histoplasmosis in 1982 and I know it all came rushing in right after that. I also got RA. My mom had JRA and my grandfather had RA. This mystery is daunting. I am 61 and I keep getting worse. Doc said because my spine has completely broken down from RA I am headed for a wheelchair. CFS is what’s keeping me down, however, not my RA.

  • Melanie

    June 15, 2014 at 3:33 pm - Reply

    Is there a way to be a part of this study? I have multiple family members who are ill.

    • Cort Johnson

      June 15, 2014 at 6:52 pm - Reply

      Perhaps you could contact the Simmaron Foundation on their contact and leave them the specifics. I imagine they would be very interested in families like yours.

    • Cort Johnson

      June 15, 2014 at 8:35 pm - Reply

      The study needs to be funded first but if you use Simmaron’s contact form on the website it should go through.

      • Mike

        June 15, 2014 at 10:14 pm - Reply

        So this study hasn’t been funded yet? Does that mean it’s contingent on the foundation getting grants or doing a successful crowdfunding?

  • James

    June 15, 2014 at 5:00 pm - Reply

    My complaint about so many CFS studies is they never trickle down to the patient. I’m not sure that all CFS patients have “rampant NK cell problems”. How would we know based on studies of at most a few hundred patients? I’m going to guess 99.9% of patients have no idea what their NK cell profiles are since there are no guidelines for testing in CFS patients so doctors won’t order the tests (unless you happen to go to the 3-4 CFS in country who do. Even Dr Montoya did not order any immune tests when I saw him, only antibody tests). Studies like this will be useful if it results in being able to go to my primary care doctor and order a test to find out if I have abnormal test results (and also hopefully some idea of what can be done about it).

    Along the same lines it would be nice if at least some of the research focused on things we can do now such as diet, supplements, mold and other environmental factors so that people could start feeling better today. While high-tech research is critical to treating certain diseases and conditions it is only one way and perhaps not even always the most efficient way to treat ill health. Look at celiac disease, avoiding one simple dietary factor can essentially cure the disease, the same with avoiding mold for some people with CFS – where are the researchers studying this? It would also be useful to determine how many of the related people with CFS where or have lived together in the same house as again environmental factors such as diet, food, pesticides, and other chemicals could be the common trigger or perpetuating factor as much as a genetic factor.

    • Cort Johnson

      June 15, 2014 at 6:51 pm - Reply

      This study could easily result in a test you could order at your doctor’s office actually. The test would indicate if you have inherited predisposition to weakened NK cell or other immune cell functioning.Then a study would be needed to identify people with that problem and determine if a drug worked for them. It would take some time but everything takes time and at the end you would have a strong foundation – targeted treatment for a documented problem – to treat a subset of ME/CFS patients.

    • Ruthie

      June 15, 2014 at 7:50 pm - Reply

      Since you are asking about studies looking at nutrition type things, don’t know if you are aware of Dr Jon Kaiser who is looking for people to enroll in his Synergy Trial looking at the use of supplements to support mitochondrial function in ME/CFS. It also includes a very small dose of Ritalin as a catalyst for the supplements. It’s an FDA approved, double blinded, placebo controlled study in phase 3 trials. He is a former HIV/AIDS researcher who is looking at ME/CFS now. You can find more info at TheSynergyTrial.org

      • Cort Johnson

        June 15, 2014 at 8:34 pm - Reply

        Thanks for spreading the word on that study Ruthie. We really need to get that study filled up. It comes with the promise of extensive mitochondrial testing if the study works out; that, in itself would be really valuable.

    • Robin

      June 15, 2014 at 8:42 pm - Reply

      I agree that all of these studies never seem to make it over the wall to patient care. I’m not even sure how that works. The FDA would have to approve a validated lab test, right? And, since primary care physicians oversee me/cfs, there would need to be a review of evidence to support testing. Who does that? The NIH?

      Mold and dieting are interesting but if you think a few hundred patients are too small a pool to reasonably suggest conclusion, even fewer people are doing these things. How many people have done extreme mold avoidance, a dozen? I’d rather money be spent on finding a cause – a treatment will follow.

      • Cort Johnson

        June 15, 2014 at 8:47 pm - Reply

        I don’t think there’s any quick way to do any of this. I like the genetic and immune cell approach because the NIH has been willing to fund NK cell research. I imagine they’d jump on this study if the pilot data worked out.

        Any drug approach is going to take time to document the target in ME/CFS, establish that it’s an important part of the disorder, and then to try a drug. Drug companies are interested in NK cells, however; it could be that a drug for another condition that fits is available or will become available.

        It’s going to take time, though.

  • ElmTree

    June 15, 2014 at 5:59 pm - Reply

    What are the heritability rates in ME/CFS?

  • Ruthie

    June 15, 2014 at 7:41 pm - Reply

    I think this is great news. Thanks Cort for passing it along!

    Since NK cells are responsible for patrolling not only for viruses but also for cancer cells, this seems like it has a huge implication for a lot of further research. Having had a mother and grandmother die in their 50’s from cancer, having ME myself with my NK cells (both function and counts) in the very bottom of the barrel, and having 2 of my kids with low NK cell function (one of whom has already had cancer as a teenager and has POTS and the other has an autoimmune disease) there certainly seems like there has to be something going on from a hereditary standpoint.

    Will be very curious to hear how this study turns out. May even call to see about being included.

    • Cort Johnson

      June 15, 2014 at 7:47 pm - Reply

      Thanks Ruthie. Please note this study still needs to funded 🙂

  • Ruthie

    June 15, 2014 at 7:55 pm - Reply

    Missed that part in the first reading. 🙂

  • Lynda

    June 15, 2014 at 8:01 pm - Reply

    This is a hugely important study for so many reasons. In my family, what I know for sure is that I am in third generation of women with primary immune dysfunction. My grandmother had polio, my mother had heart disease/fibromyalgia and arthritis. I have me/cfs, fibromyalgis and autoimmune diseases such as constant cycling of viral illnesses, I know my initional assault was at age seven when my appendix burst. At ages 16 and 17, EBV knocked me out and from then on I’ve been diagnosed with chronic mono. Still trying to overcome these viruses and others, I went to work at a care facility andas and a condition of employment to have the swinr flU vaccine…
    Our aughtens and grand daughters also have immun dysfunction in many of the same.

    • Cort Johnson

      June 15, 2014 at 8:33 pm - Reply

      Another family that would be great in a case study. Genetics – then a gut problem, then EBV – a triple whammy over time…

  • Mike

    June 15, 2014 at 11:36 pm - Reply

    Cort — Any more info on the two drugs currently in clinical trials? Are these new drugs or re-purposed drugs? Are the clinical trials that the drugs are undergoing trials for the treatment of ME/CFS, or something else?

    • Cort Johnson

      June 16, 2014 at 3:55 pm - Reply

      My understanding is that they’re either in development or in clinical trials now. My belief is that they’re in clinical trials but I’m not sure. They’re being developed for other conditions.

  • mexas

    June 16, 2014 at 3:28 am - Reply

    At this point I would be happy to stop the autoimmune antibodies.or have a normal CD4/CD8 ratio.

    • roberta

      June 18, 2014 at 12:04 am - Reply

      Mexas, I got curious about the autoimmune antibodies you mentioned, because I received one positive autoimmune recently (anti-GAD). Do you mind telling me which ones you were referring to?

      • mexas

        June 24, 2014 at 7:07 pm - Reply

        Sorry for the delay. My auto immune diseases (so far:)
        anti mitochondrial AB
        anti thyroid Hashimotos disease
        antiphospholipid-lupus anticoagulant

  • Eilidh Hewitt

    June 17, 2014 at 6:15 am - Reply

    Thank goodness simmaron are keeping grounded in their appraoch to ME / CFS ie. one core disease with diifferent triggers. There is so much confusion and jumping ahead, keeping it simple and keeping the research papers coming is the key to getting to the heart of this disease. Just gaining proper recognition for this disease would transform our lives and open up all kinds of oportunities for drugs, proper medical care etc.
    With five people in my family with ME, this is a very encouraging piece of research into genetic predisposition and I will be giving a donation.

  • Trosten

    June 22, 2014 at 2:41 am - Reply

    I do see a possible genetic issue in my family what with all the other autoimmune diseases. I just can’t see how one can apply the genetic theory to cluster outbreaks. Would have to be widespread genetic predisposition for that to happen. Well surely Dr Peterson would have some ideas about that one.

  • Sasha

    June 23, 2014 at 9:25 am - Reply

    Hi Cort – thanks for this info – this sounds like a great study to support, and a six-month turnaround is highly attractive.

    I’m a bit confused, though – are Simmaron asking patients to donate specifically to this study? If so, how do we do that? What is the $ target that will get it funded?

    Or, if we make a donation into Simmaron’s general fund, will it go to this study?

    • Cort Johnson

      June 29, 2014 at 5:36 pm - Reply

      My apologies Sasha. I missed your comment (until now). Simmaron is asking for donations for this study. I see on the donation page there isn’t a link for this study yet. I’ll send your information onto Simmaron in case you wish to donate telling them it’s for this study.

      The target is 75K. I’ll see if I can find out how close they are to it.

      Once again I apologize for missing your comment (until now :)).

    • Cort Johnson

      June 29, 2014 at 6:28 pm - Reply

      A button (NK and Immune Cell Receptors study) has been added to the Donation page allowing you to direct your donation to that study. SImmaron has $40,000 left to fund, and they’ve started work with the funds they have.

      This is an exciting study! I hope we can get it fully funded.
      .

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